Immune Deficiency Foundation

The pi community turns to idf for individual assistance including but not limited to answering insurance questions, locating a specialist in their area, finding treatment information, and learning more about their diagnosis. Idf's patient advocacy specialists provided answers to over 1,900 questions on 300 different topics from individuals seeking education, information, and assistance. Idf also works at the federal and state levels to educate lawmakers and the public about issues that impact those who are immunocompromised. A strong volunteer grassroots advocacy network, including health access advocate volunteers, inform policymakers about issues affecting those with pi. In 2024, 850 individuals met with and sent more than 2,700 letters and messages to legislators and executive officials to ensure that people with pi can live healthy and productive lives with excellent treatment options and access to the most appropriate healthcare available.

To improve the diagnosis, treatment, and quality of life of those affected by pi, idf has several initiatives to provide resources directly to the medical community, including exhibiting at ten medical conferences in 2024, providing information and resources to healthcare professionals, and administering a consulting immunologist program that allows clinicians to consult with an expert clinical immunologist about patient-specific questions to obtain valuable diagnostic, treatment, and disease management information. Idf conducts national surveys and focus groups of patients, physicians, and other healthcare professionals, building a collection of quantifiable data related to primary immunodeficiency. In 2024, over 1,000 individuals participated in an idf patient survey to gather data on ig treatment. There were four publications in 2024 using usidnet data. Because medical research is a priority, the idf research grant program funded four research grants for pi related research in 2024, totaling over 159,000.